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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Under the Eight Ball movie - Conspiracy theory?

Discussion in 'Other Health News and Research' started by _Kim_, Dec 15, 2009.

  1. Lily

    Lily *Believe*

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    Dreambirdie......

    I am so thrilled that you seem to be feeling better!!!!!! I have missed your posts these past few days......I hate that puking stuff and felt so bad for you. Nothing worse than puking in my book, and I've had some bad stuff!!

    Love that photo too!!!!
  2. fresh_eyes

    fresh_eyes happy to be here

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    @DB: OMFG, is that really your neighbor's penis bush???
  3. _Kim_

    _Kim_ Guest

    L:eek::eek:kout!! dreambirdie is back!! This is the exact reason why I wanted to teach you how to post pictures.

    I didn't know that lingam trees could be found in the California landscape...

    [​IMG]
    Chandra Lingam, now with a tree growing from it.
  4. Dreambirdie

    Dreambirdie work in progress

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    Thanks FE, Linda, and Kim for your warm re-welcome. :):):)
    I'm still wiped out, so I'm keeping computer time to a minimum.

    Sorry Kim, but I'm still very basic with the picture posting. :eek:

    But YES... that REALLY is a penis bush. If you look closely you will see that this guy actually cut away the eaves of the house to "accommodate" it.
    Sometimes my life feels like ongoing marathon of Fellini movies. If you've ever seen City Of Women, you'll know the penis bush episode.
  5. brenda

    brenda Senior Member

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    I was poisoned with pesticide, it was not an OP but a similar one called carbamate

    http://emedicine.medscape.com/article/816221-overview

    It happened when we moved into a house where the previous tenant had cats and the house was full of cat fleas which suddenly appeared when the central healing went on. We had bites on our legs. I called the local authority who owned the house and they sent out some men who sprayed the house right through even the beds. Foolishly I imagined that it must be safe if the men were doing it without masks etc. My sons bare legs were sprayed as they sat watching on the sofa.

    As we had just moved in, and had had a lot of stress beforehand, and with a handicapped child, we were barely thinking straight or aware of things, but soon we noticed that we were having constant flu symptoms. I don't know why I did not associate it with the spray. Since I was poisoned twice with mercury as a child, my cognition has been dysfunctional and I just did not make the connection. I was affected the worst because of this previous damage but my sons, whom I think received mercury via the placenta, were badly affected too. Children usually are.

    One son started to have asthma like symptoms and was taken to the A&E on a number of occasions needing nebulising and on occasion - oxygen. I had started to have blackouts during vomitting attacks. We seemed to get flu constantly. I also developed allergy symptoms and then what was supposed to be asthma too. Then the other son developed asthma. Three members of a family in quick succession yet the GP did not think it unusual. I was wondering whether it was because we had moved near to a river and the air was bad. The GP discounted all of my questioning.

    Within a short time I was using about 10 medications, for my skin hair, lungs and anti-histamines including steroids. My son was often on prednisolon. We all had ME symptoms but did not get any diagnosis for a long time. I eventually realised that the medications I was on were not going to heal me so I got off them all even the steroids for asthma by doing breathing exercises and adjusting the diet.

    Very slowly we got a little better but it was a nightmare.

    It was not until 10 years later - 1999, that I read about OP's and put the two together. I did a lot of reading and them decided to sue the authorities employing a solicitor who was experienced in the sheep dip cases in Wales. It dragged on for a number of years and then one day we heard that legal aid had been pulled and all of the cases were dropped. A cover up. We got nothing. My sons did not recover their former health.

    I wonder how many homes had been sprayed like that and what happened to the men who did the spraying unprotected. As soon as we started litigation, of course the council reviewed their policy and people had to leave the property for a week during spraying.

    I have since talked to many people who have ME symptoms and who were poisoned somehow in the past either by head lice medication, garden sprays, woodworm spray in the loft, from farms or other ways.

    If you add this together with the amount of mercury around from places like crematoriums, who are pumping it out into the air from amalgams, and the amalgams themselves, it is no wonder there is so much sickness from opportunist pathogens.
  6. _Kim_

    _Kim_ Guest

    I just took a closer look - that bush is not just one big house-eating phallus, but it is supported by two giant red-tinged inflamed looking testicle-bushes as well. I think his penis tree has "orchitis".
  7. Dreambirdie

    Dreambirdie work in progress

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    Yes, that penis (about 15-18 ft.) and balls (about 7-8 feet) are actually sculpted eugenia bushes, which were repeatedly infested with some kind of bugs, that he had to regularly spray for. I'm SO GLAD I don't live THERE anymore!
  8. fresh_eyes

    fresh_eyes happy to be here

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    @ brenda, that's horrible! I'm sorry you went through that. Do you think that was the beginning of your ME/CFS?
  9. fresh_eyes

    fresh_eyes happy to be here

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    This is so wrong on so many levels.
  10. _Kim_

    _Kim_ Guest

    NY Times Review 'Under the Eightball'

    December 16, 2009
    On the Nightmare Trail of Lyme Disease by Jeannette Catsoulis

  11. brenda

    brenda Senior Member

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    fresh_eyes

    I'm not sure as I had ME syptoms before then from the mercury poisoning but I certainly got a lot worse then worse again after contracting Lyme.
  12. markmc20001

    markmc20001 Guest

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    good laugh


    thanks for the good laugh. I guess my gated community is not so bad afterall.

    on the other hand, that is very wrong. What a terrible way to have a relapse though.

    he should not spray that thing in public.
  13. Daisymay

    Daisymay Senior Member

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    Hi Dreambirdie, my husband and I both have CFS, since 1980, classic viral triggers, epstein barr and the enterovirus coxsackie b3, but a year or so ago we had some genetic testing done which showed reduced liver funtion and another gene PON1, which together suggested to our Doc that we should be tested for pesticide residues as the gentics meant we aren't good at detox ing pesticides amongst other things.

    So we had a fat biopsy done, painless, which is them examined for pesticides as they tend to hide out in fat AND importantly cell membranes which are composed of fatty acids.

    Well the results came back with 3 1/2 times the top of the "normal" range (pesticide in your body are obviously not normal) of LIndane, an organochlorine pesticide and seemiongly one of the most nasty and the most persistent. Also high levels of another organochlorine pesticide.

    So we are doing FIR sauna to get rid of them. These pesticides aren't good news to have in your body at all, neurotoxic, carcinogenic, affects your immune system, endocrine system, cardiac system, mitochondria etc etc etc.

    We're not finding the FIR easy, takes an awful lot out of us, and we are having to take it very slowly, BUT over the year we have been doing it we do both feel we are a wee bit better, sort of stronger deep down if that makes any sense.Whatever, these are chemicals we feel we really need to get rid of.

    We're over in the UK, not sure if such fat biopsy tests are available over there?

    Our doc thinks that pesticides are a major problem in a ot of people with CFS, MCS, GWS etc.

    You read of lots of CFS people coming up with poor detox via methyation and or liver detox so I do wonder just how many of us have pesticides as an additional problem not necessarily due to some obvious exposure like you and the penis tree episode but merely, as our doc said, through a lifetime of poor liver detox the body accumulates these substances from food and the environment when a person can't detox as efficiently as a normal person.

    Who knows perhaps poor detox/pesticides is part of why in some people XMRV is a problem while in other it isn't?

    We were both exposed to lindane we suspect via flea powder when we travelled out to Nepal in the '70's, and then when we were at post grad teaching college. Lindane from flea powder is implicated in GWS too. Lindane is also sometimes used in shampoos to get rid of nits.

    The pesticides in the membranes are the worst offenders as when cells naturally die the pesticides are redistributed around the body causing problems. I think in fat it is more static but still gets redistibuted to a degree.
  14. Dreambirdie

    Dreambirdie work in progress

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    Thanks Daisymay for your input and info on the FIR saunas... and the biopsy info.

    When I have the money and energy, I am going to pursue some of your, and Kurt's, and Rich's ideas a little further.
    I KNOW for SURE that the pesticide played a HUGE role in my illness, but it would be great to have it documented and diagnosed.
  15. Dreambirdie

    Dreambirdie work in progress

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    Oh yes it was TOTALLY WRONG to be sprayed and have my health damaged by it! It was a chemical "assault," for which I had absolutely NO protection, other than to move, which I was much too ill to do at the time. I finally resorted to having a lawyer write a letter to this guy to request that he warn me before he sprayed, but that was only minimally helpful, due to the fact that the chemical broke down slowly and lingered in the air for many weeks after the spraying.

    Also, back in the 1980's there were no government agencies that were willing to deal with the issues of environmental toxins, at least not locally.
    So being poisoned was just "tough luck".

    Eventually this chemical (penta chloro phenol), which devastated my immune system, was fortunately banned.
  16. mersan

    mersan Guest

    dasiymay

    Dasiymay,

    Where did you get the PON1 genetic test done ?
  17. _Kim_

    _Kim_ Guest

    Hi mersan

    I saw you sneak in here with your first post. Didn't think I'd notice, did you? :)

    Hope you get your question answered.
    And a big warm welcome to the forums.
  18. Mark

    Mark Acting CEO

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    FIR Sauna Tips

    I used a FIR sauna for roughly half an hour to an hour a day for 6-12 months (I didn't stick to the routine but that was my target). Now I use it as one of many things I do when I relapse.

    Some tips on saunas...

    - Don't try public saunas, they seem to do more harm than good. Both from what I've been advised by the MCS doc and from by own experience, they made be a lot worse. Opens up your pores and lets in all the wood varnish, the perfumes worn by everyone else who's been in there, etc. All of those factors are why it's only FIR saunas that do the job. So you have to buy your own FIR sauna. Mine was pretty cheap, and turned out to be a fantastic investment.

    - Build up gradually, but the aim really is to get a good sweat on. I had a cool bath ready, and I would get a big sweat on, then get into the bath and wash it off, then back into the sauna.

    - I also had towels at the ready to wipe the sweat off the seat and off the sauna itself, also to mop my face as I went along so that I could keep going for longer.

    - Obviously, drink lots of (filtered) water before, during, and after to replenish your fluids.

    - It's really boring, so you need to set it up in front of the TV and watch something - bearing in mind you'll be popping in and out, so ideally something you can dip in and out of, or pause.

    - A neat trick for getting a sweat going is to blow cool air onto your face and skin once you start to sweat a little. Tells your body that sweating is working, so then it does it loads more!

    - Even though it's boring, enjoy it! Once I'd built it up, I did it quite extreme. I love saunas anyway! Experiment, feel your way through it; for me I enjoy those sensations of getting really hot, till it's pretty painful, and then the relief of the cold, until it's uncomfortable, then warm up again, etc etc. Stretching myself with all that did take my mind off everything else.


    Does it work? If so, how, and why?

    I can't say for sure, because during that time I was also taking masses of supplements and doing lots of other stuff - I spent a year full-time working on every aspect of diet, lifestyle, environmental advice I could get my hands on. So I don't know exactly what worked, but all together, that year turned things round for me.

    I won't go into all the details why now, but I've always known that sweat is critical for me. I seem to 'infect' anything I sleep in or on, and anything I wear, within a few days; once it's infected, it makes me itch to the touch and then all the other symptoms follow. This 'infection' doesn't seem to have any effect on anyone else, other people have been 'exposed' to the stuff that sets me off and nobody's had any adverse effects, short or long term.

    I've always assumed the explanation lay in sweating out 'toxins' from the blood, whether chemical toxins or food that leaked from my gut. But the XMRV news puts a different spin on it. I'm not sure what the latest is, but I've seen mentions of sweat as a possible transmission mechanism...


    What a horrendous story dreambirdie, what an awful way to be made sick - and to live with the knowledge of how it happened without being able to do anything about it. If the experience of thousands of people counted as 'evidence' then the case would already be proved. In my case, I suspect it was a heater that burned through the carpet while I slept. But there are probably enough toxins in our food and environment to need to look no further than that, for most people.

    I think one day all this will be properly understood and we'll know exactly what is/was toxic and why, and what it did. But I've thought about it a lot, and I'm pretty sure there will never be any comeback; we're never going to be compensated for the poisoning that destroyed our lives, and the companies and individuals responsible for doing it are never going to be brought to justice. They will continue to point to the fact that science backed up and approved what they were doing, and they operated within the parameters allowed them. It's hard to live with that injustice and know it won't be righted, but I guess all you can do is the best you can with the hand you've been dealt, same as anyone...
  19. OverTheHills

    OverTheHills

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    More on Sauna Experience:

    Ever since my early twenties I have had a lymph gland on my neck come up at times - sometimes when I was ill, when I exercised hard (specifically if I had been injured and hadn't done any big sweating for a while), and since getting ME/CFS when I accidentally ate something with sulphites in (pain in right sinus as well).

    I was recommended sauna for detox purposes and that used to bring the lymph gland up as well. It could be toxins mobilised by the sweating bringing on a reaction, or it could be just the raise in blood pressure I suppose. Any thoughts how to prove this anyone?(I'm such a sceptic)

    Certainly I used to enjoy sauna as the only time I felt warm all the way through - ME/CFS has really worsened my tendency to Raynauds and cold extremities. (I think I'll post that under symptoms and see if anyone has any advice) .Public sauna OK for me as I'm not too bad on chemical sensitivities I think.
  20. _Kim_

    _Kim_ Guest

    Hi OverTheHills

    You caught my attention with your reaction to sulphites. I've been trying to figure out the connection. You see, about a year after I nearly died from Mono, I started getting what I refer to as narcoleptic episodes. When they'd hit, I'd have to sleep, wherever I was. I didn't nod off suddenly, like in true narcolepsy, but would have a little time (minutes) to find a place to lay down.

    I was in computer programming school at the time and would mostly slink out of class, go to my car and sleep it off for a half hour or so. I'd be exhausted when I came to, but could will myself to stay awake.

    I traced these episodes to consumption of processed meats (bacon, lunchmeat, etc). In my youthful zeal, I declared all meat bad and became a vegetarian. 25 years later and I'm trying to figure out the connection between what was in those meats (sulphites?) and my first hint of CFS following the Mono.

    (Oh, and welcome to the forums :))

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